More time has passed than I had hoped since my last blog post, but I got very sick and pretty much fell off the face of the Earth for several days (you’ll see why). It has been a much, much longer time since I’ve written an official Health Update. And actually... a lot has happened. Where do I even begin?
|So much driving|
I have seen so many doctors. I have to drive (okay, be driven) to the university hospital, up to 8 hours round trip (traffic is unkind), at least once a week and sometimes up to four times a week. The amount of doctors, procedures, and tests has grown so much larger. I have even been incorporated into conferences/super clinics that attempt to diagnose and treat complex and difficult diseases. Because that’s what I’ve become- a case of complex and difficult diseases, to which my personage is only secondary. Between my care and my son’s, we easily spend 40 hours a week either at doctor’s and therapy appointments or driving to and from and waiting for those appointments. Our lives have been so consumed by disease.
So, an update, right? Well, for me, it seems things only roll downhill. Sometimes faster, sometimes slower, but always downhill. Several new things have come to light, many of which I have not had the energy (or maybe the will) to share. Autoimmune diseases are tricky, because many can affect large areas, if not all, of the body. When you mix several autoimmune diseases, you end up having many diseases affecting everywhere throughout the body, and it becomes difficult to figure out which is the problem where. Sometimes treatments of some diseases can modify or mask what is going on with another disease. It becomes difficult trying to unravel everything, much like solving a Sherlock Holmes case without Sherlock Holmes. Not to say that my doctors are not bright and dedicated, some of them certainly are, just that it takes considerable time and skill and resources and clarity to find a lot of obscured connections.
So, anyways, what I’m trying to say is that I’m sick everywhere and the more you look, the more you find, but not always in the ways you think and not always right away.
It has become apparent that something else neurological is going on within me. I likely have another neuromuscular disease. Previously a few other neuromuscular diseases were brought to the table to discuss, but given the Sherlock complexity, nothing was ever definitive. Now, things have changed though, and in light of new information, we must pursue another diagnosis. What new information is that? Many of my involuntary muscles are becoming weakened to the point of functional loss, as well as sensational loss.
The most glaringly obvious piece of evidence is that I have what is called a neurogenic bladder, which means I have lost all control of my bladder. During testing, it was discovered that there is absolutely zero contraction of my bladder due to the absence of control of those muscles and nerves. The normal human bladder holds a maximum of 500 ml, and during this test mine held over 1300 ml- that’s more than 2.5 times the size of a normal human bladder! (like a small watermelon guys!)- and I still was unable to go voluntarily. Not only have I lost all function of my bladder, I also have no sensation. I cannot feel that my bladder is full, nor can I feel any part of the urinary system. This loss of function is obviously serious, for many reasons. My overfull bladder can destroy my kidneys (via a sort of back flow) and destroy the walls of my bladder itself (something I have already had the joy of experienceing). It also means that something else neuromuscular is affecting my body (myasthenia gravis- the neuromuscular disease I am already diagnosed with- cannot do this type of damage) and is apparently already moving swiftly and mightily. I now have to use a catheter every day for the rest of my life, which is not easy with such limited mobility I must say. I will never regain the use of my bladder again. I am in my twenties, and I will never be able to urinate on my own again (I know that was uncomfortably honest, but it’s true and it needs to be said).
I have also lost mobility in my digestive system, a condition called gastroparesis. This is a functional loss of the muscles, a weakness, in my entire digestive system. Things move slowly, and some areas are doing a poor job. One problem here is vomiting. My stomach is unable to stay closed and up the esophagus it comes. Now, I have to say, this vomiting is unlike I have ever seen or experienced. My body is so weak now that I am totally unfit for such a laborious act as vomiting. My face, and sometimes eyes, becomes covered in dozens of broken blood vessels. I pull several muscles and pinch nerves, even occasionally bruise. It is incredibly painful, and sometimes I even aspirate (not helpful for my lungs). Then, my body is unable to compensate for the loss of electrolytes- a unique problem that has provided no clear answers, but proven to be quite dangerous already- and I become even more weak and frail. This issue also interferes with my breathing, because my stomach cannot always stay closed while I am using my BiPAP. This forces air into my stomach, to which my stomach reacts by vomiting, and we go ‘round and ‘round. This particular issue just consumed the last two weeks of my life, some of the worst days of illness I’ve had, likely set off by headaches (see below). Unimaginable pain, such weakness. Sometimes needing to choose between sleeping and breathing. My life completely stopped around me as I lay in agony, unable to leave the bed for days, excised from my world.
Speaking of breathing… This nebulous weakness has been everywhere. I have had increased apnea events at night, for which my old APAP (breathing machine) was no longer adequate. I now have a specialty BiPAP that is more suited for my needs. It doesn’t just breathe with me (like the APAP), it breathes for me. I have been suffering from carbon dioxide toxicity, because my lungs are not strong enough to get it all out. The worst of that is terrible headaches (in Fault in Our Stars she had low oxygen headaches- they are the same headaches- and she was screaming and wanted to die). I also recently had a swallow study, which showed very mild aspiration issues, but mostly noting breathing fatigue.
I have been having cardiac/circulatory system problems, which actually seem to be connected to this neuromuscular disease as well. When I stand or move, my heart rate increases dramatically, as well as dizziness and fainting. I have palpitations and blood pressure fluctuations too. My heart rate is always quite high, but standing or moving causes a profound change. The theory is that my blood vessels in my legs and lower body are unable to constrict to get more blood to my upper body, to my brain, due to neuropathy (dead or damaged nerves) in the nerves that would control such a change in those blood vessels. The poor circulation to my upper body and my brain seems to only intensify those headaches.
|My power wheelchair... outside! (well, I couldn't go on the beach, but it's outdoors at least)|
I am in my wheelchair full time. I finally have the ability to use my power wheelchair outside of the house! Insurance provides a power wheelchair, but does not provide any way to leave the house with it (a loop hole they use saying the wheelchair is for in home use only… if I need it inside my home, how else could I get outside?!), no ramp in and out of the house and no transportation system. Thankfully, I was able to access an equipment bank, which is a free library of accessibility equipment, a Godsend for people who have been consumed by illness and no other help. We got a transportation system for our truck. It is not perfect and needs work, but I have been able to get out in the world with a bit more independence. We asked a neighbor if we could use his old unused piece of fence, to which he agreed, and we precariously used that to remove my wheelchair from the house. It’s not something we can use regularly to get in and out of the house, but it did its job.
I’m not really able to push myself in a manual wheelchair any longer. I again attempted physical therapy- this time with the university, “the experts”. The therapist was knowledgeable, and I certainly learned a few things, but I will never be able to really walk again. Once more I was told that my power wheelchair is the safest place for me. I agree, but it is with mixed feelings. Walking was an inseparable part of me previously. Nearly every free time I had was spent walking. Walking in the neighborhood, in the woods, up a mountain, down a cliffside, along the shore, around the city. It was not just what I did, but who I was and how I came to terms with things. It’s hard to find who you are, especially when who you are changes without your consent.
I went to a conference where more than thirty dermatologists reviewed my case, and me (I was present). I have had biopsy after biopsy to try to address some autoimmune skin issues. Even with dozens of the brightest minds, I puzzled them a bit. I am still an unknown, more or less. The other combined (super) clinic that I will be attending soon, and looking forward to, is a neurology-rheumatology clinic. It sounds promising, and I am anxious to get underway, to start digging into this additional diagnosis and prognosis.
I have been having difficulty, from time to time, in processing all of this. After this recent severe illness episode of digestive weakness, I have been having more trouble with feeling angry. Angry at my situation and my limited power to change, angry at others for not understanding or not trying to understand, angry at others for being ungrateful, even angry at myself for being angry if you can believe that. I’ve been hard on others and even harder on myself. I’ve been a much less patient mother than I want to be and know I can be and frustrated with my son’s negative autistic behaviors. Contrary to so many sufferers, the only one I never seem to be angry at is God. I am a mother, and I just know that if God is my father, he is just as devastated to see me suffer, likely more so, than I.
I will create a blog post about my son and his health update at another time soon. For today, I think this is enough to think about. Across both health updates, I will include the photos that belong to no other purpose than our "ordinary" summer days.
|Snowy plovers, I think?|
|This is where I used to go several days a week to just walk and think when I was a little kid.|
|Playing with Great-grandma|
|Drawing with chalk on the sidewalk with "Geordy La Forge"|
|Our son is quite devoted to Star Trek. He got this for enduring vaccinations without protest.|